Autism’s Got Talent
Posted on June 20, 2018
A few weeks ago now, I got to perform at Autism’s Got Talent, a showcase for autistic people put on by the charity, Anna Kennedy Online. The show took place at The Mermaid Theatre in London and saw about twenty different acts perform, from music to dance to magic. It was a surprising, rewarding, and fun experience so I thought I’d write a little something about it.
I really wasn’t sure what to expect. Despite getting my diagnosis nearly three years ago, it’s only recently that I’ve started to attend events for people with Autism. It took me a long time to figure out what my diagnosis meant to me and I needed some time to find steady ground before I felt comfortable to… I guess, ‘publically identify’ as autistic, if that makes sense. So I’ve only been to a few events like this and I’ve honestly been blown away by how kind everyone is. Everyone working the show was patient and engaged and that made such a difference to the whole atmosphere; it made it a lot less stressful. As a performer, I’ve never been treated badly because of my Autism but I have felt like it’s an inconvenience, that I’m being difficult for struggling with certain things. But at this event, the things that are usually considered adjustments were already built in: there was a room specifically allocated for quiet time; the instructions and explanations were really clear; there was a meet and greet the day before (with some admin stuff) so that everyone had time to get used to everything; they had a fantastic team there to help all of the performers manage the day, all of whom only had two acts to look after; and if anyone was getting stressed, they did an excellent job of remaining calm and composed. These things made for such a supportive environment before and during the show and made the whole thing such a pleasure to be a part of.
The day of the show was a long one. We had a tour of the venue so we knew where everything was and then we got started on the sound check. Despite the long list of performers, I didn’t feel rushed at all: we were encouraged to take our time and get comfortable. Having gigged quite a lot in the last few years, I’m used to doing everything at breakneck speed (only to wait for ages for something else usually) and while I can cope with it, not having to was a real gift. I really appreciated that.
An interesting opportunity I hadn’t foreseen was the chance to be interviewed, about my experience of the show and my experience of Autism. As I’ve said, I’m still making sense of how Autism fits into my identity so that was a bit nerve-wracking, but apart from my constant fear that I’m embarrassing myself, it went okay. And it felt positive – and empowering – to talk about the way I experience the world.
Another thing that really helped was having people I knew with me. I had Richard – my cowriter, guitar player, friend, and general partner in crime – there as he was playing guitar for me but almost everyone had a family member there too and that was really nice. Again, I can cope with being by myself but having people there who know me, who know my anxieties and how to handle them, made the day much more manageable and enjoyable.
The sound check had been well organised so most of us were done by lunchtime. I ran out to do a few things and then had a couple of hours to chill and gather my energy. I definitely needed that. And then, all of sudden, it was time to get back to the theatre, take photos, and go to the green room.
I missed a lot of the first half because I had to be in the green room in preparation for getting on stage for my performance and, although I was sad to miss the performances, I got to hang out with some seriously lovely people that I hope to stay friends with. Obviously being autistic doesn’t automatically make all autistic people compatible friends but there is something pretty magical about meeting people who understand parts of you that others just don’t, naturally and without having to try (I want to write something more in-depth about autistic friends vs. non-autistic friends because I think there’s space for an interesting debate about whether it matters or not, but I did just want to point out the special-ness of having a natural connection with someone that doesn’t require either person to be anything but who they are). We laughed a lot, shared photos of our pets, and sang the Friends theme tune. As much as I love performing, I think that may be my favourite part of the experience!
When it came my turn to perform, we had a technical malfunction: the microphone didn’t work. That’s always a fun way to start a performance… It happens; it was fine. In all seriousness: I’m not fazed by performing anymore. I get nervous and restless before a show but I’ve done it enough that it doesn’t really impact my functioning or my ability to perform; I can be anxious and still handle anything thrown at me (such as equipment failure…) without falling apart. We switched out the microphone and started again. All good. The performance was so much fun (even though ‘Invisible’ is a sad song) and it was really special to play for an audience that was so genuinely supportive of the performers. If you’re reading this and you were there, you guys were wonderful! I also got to mention this blog before leaving the stage, which was cool.
In the interval, something really special happened. A number of people came up to me and told me how ‘Invisible,’ resonated with them or how they wanted to find my blog because they thought it would help someone they knew. The idea that something I’ve done – little old me – could have an impact on someone is so incredible and magical and special to me. All I want to do is create things and help people, and create things that help people. So those interactions are amazing to me. Does that make sense?
It was a really, really special show and there were some amazing performers. I’m so grateful to have had the opportunity to be a part of it. I’m still struggling with my words, as I have been for a while now, but thank you to everyone involved and everyone who came to and supported the show. It means the world to me and I know it means the world to everyone else who performed.
A Little Less Wise?
Posted on June 16, 2018
So this week’s adventure was having one of my wisdom teeth removed. This has been a long time coming and it’s been bothering me for almost a year but apparently it wasn’t easily accessible or something else dentist-y. So we waited. But, at my last appointment, it was deemed removable and here we are.
If you’ve read my post about seeing a specialist dentist, then you’ll understand my fears around dental work. Seeing the specialist dentist has been a lifesaver and one of the best, most helpful things to come out of getting my Autism diagnosis. And with the help of the wonderfully kind and patient staff, I finally managed to have what would probably be considered a normal check up a few weeks ago. That was a huge milestone. And so, not wanting to undo all that progress, I was scheduled to have my wisdom tooth (and a filling) done under general anaesthetic.
On Thursday of this week, I got up super early and headed to the hospital. It was actually a private hospital so everything was very smart and efficient and the whole thing was over very quickly, although I was under for three hours rather than the originally planned one. I woke up feeling remarkably okay, a bit sore but otherwise fine. After my experience with Quetiapine, waking up from a general anaesthetic was like waking up from a nap and the pain in my face wasn’t too bad. In fact, I was bothered more by the headache I’d woken up with, which I’m pretty sure was a side effect of coming off Venlafaxine (I’ve been having almost migraine level headaches a lot lately – but more on that in another post). So it wasn’t long before I was discharged and out of there.
A couple of days on and I’m not feeling great. I’m fine but it’s still painful enough that I can’t really do anything other than sleep. So I’m sleeping a lot, taking painkillers, and trying not to stress myself out. The weirdest thing has been the way my lips have been twitching ever since I woke up from the anaesthetic (kind of like when you have a jumping nerve in your eyelid – really annoying, right?). This is listed as one of the side effects in the paperwork so while I’m not panicking, it’s pretty unnerving. I’ll be relieved when that wears off – apparently it shouldn’t last more than a few weeks, although I’m obviously hoping it will be less than that.
Comparative to my last dentistry-under-general-anaesthetic experience, this one has been considerably better. The worst part last time was that they accidentally split my lip in the corner of my mouth so every time I opened my mouth for the next week or so, the cut reopened, which was very unpleasant. My Mum remembered to bring that up when we spoke to them beforehand and so they slathered me with Vaseline throughout the procedure. It was pretty gross afterwards but I’m very grateful that they did it; I’m really glad that I didn’t have to go through that again.
I’m sorry if this isn’t the most articulate blog post I’ve written. My brain has been feeling fairly scrambled recently, after all the medication changes and the general anaesthetic, and getting my words to flow has been a struggle. Hopefully that will pass soon.

A Need For Balance
Posted on June 9, 2018
In this video, Samantha Pena talks about her experience of OCD, what it’s like to live with it, and what she’s gained. Her experience is pretty different to mine but there are definitely parts of this that I strongly relate to, especially the intensity.
Here are some quotes from the video:
- “It’s like being underwater for an extended period of time. You’re holding your breath and it’s scary. And without even thinking about it, your body naturally tells you that bad things will happen if you stay underwater. Your body tells you to fight to get out of that situation. That’s the way my body felt every time I touched something asymmetrically.”
- “OCD is Obsessive Compulsive Disorder. It’s one of many anxiety disorders and it all starts with the obsessions. The obsessions are the recurring, uncomfortable thoughts and worries that lead to the compulsions. The compulsions are in response to the obsessions, attempting to satisfy them, and it becomes a disorder when your obsessions and compulsions take up so much of your time that you are unable to move through your day ‘normally.’”
- “I avoid door handles because the cold metal sensation takes a lot for me to recuperate from.”
- “Anytime I’m itchy, I’m twice as itchy.”
- “An average day for me means avoiding thirty two different sections of lines on the ground, sixty fixes for any time anyone touches me or bumps into me, mentally preparing for a hundred and twenty four door handles, two hundred and seventy casual encounters anytime I have to touch something, and four hundred and twenty itches. In total, that’s nine hundred and six obsessive-compulsive thoughts that occur within one day. And that’s only symmetry related.”
- “I was so anxious that it hurt. It was easier to deal with my [school] binders than to live my own anxiety.”
- “I always mentally prepare for my day. I always have a plan. I even plan to plan my next plan.”
- “There is an overall understanding within me that life has a need for balance.”
- “I often hear the expression I ‘work better under pressure.’ I have OCD. I am literally always under pressure.”
Finding Hope
